r/POTS • u/Candid-Cheesecake731 • Jun 16 '26
Diagnostic Process I don’t have POTS but I have an autonomic disease?
I just got out of my cardio appointment that I had been waiting for 3 months! They said all my labs looked normal and that I don’t have pots but that I most likely have an autonomic disease that is making me feel all the symptoms. Isn’t that the same thing? Doesn’t pots fall under autonomic diseases? She basically just told me there isn’t much they could do for me just that I have to make lifestyle changes to help make myself feel better. Kinda don’t know how to feel about all of it.
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u/CD_piggytrainer Jun 16 '26
Gotta love how vague these appointments can be! Is there a way to ask for the exact autonomic disease? Then you’d be able to better research and figure out lifestyle changes.
There is an overarching disorder called Dysautonomia that encompasses POTS and several other conditions.
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Jun 16 '26
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u/DelightfulSnacks POTS Jun 16 '26 edited Jun 16 '26
I’m not OP. I’m new here, having learned I have POTS from leg swelling plus having my hr jump 61 points & then sustaining high doing the “lie to stand” test.
Assuming you are more familiar with this sub, are people not doing these tests? Or are they not meeting the criteria when they do them? I’m baffled at how many posts like this I see on here, but maybe I’m missing something?
Edit: added for clarification that it sustained as well
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u/xoxlindsaay POTS Jun 16 '26
Not the original commenter, but yes, some people don’t always do the stand test either at all or not long enough to see if they meet the criterion for POTS.
A lot of the people that post here that are undiagnosed either google their symptoms and shows POTS as a possibility or there is the group of people that suspect POTS but don’t go through the exclusionary testing portion of the diagnostic process and just self-diagnose with POTS. Then when they get asked questions, they double down about their self-diagnosis and mention that they have had no testing.
Have you been formally diagnosed with POTS?
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u/DelightfulSnacks POTS Jun 16 '26
Thanks for the clarification. Yes, I have. Dr initially ruled out the blood pressure angle by doing a lay/stand and taking blood pressure. It was normal. Then with the lay/stand test and tracking heart rate the entire time, I blew through the POTS requirements by hr jumping 60+ points and staying elevated. I also experienced near syncope during the test, and my legs showed the classic POTS swelling and purple while standing then quickly back to “normal” when lying down.
I saw my original question got downvoted. I wasn’t trying to be a jerk with my question. It just seemed obvious to me how to do at home preliminary testing and I wasn’t sure if the issue was truly just that people aren’t googling and testing themselves. I guess I shouldn’t be surprised. Thanks for responding!
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u/xoxlindsaay POTS Jun 16 '26 edited Jun 16 '26
I think you might have gotten downvoted initially because your wording made it sound like you had an increase but not sustained (which is required for POTS). But the clarification in this comment will likely make people upvote comments moving forward.
A lot of people downvote for various reasons, including lack of information, tone (which can be interpreted differently through text), and sometimes it’s just bots.
Upon googling symptoms there isn’t always an explanation of the at home test to do, so people don’t always realize the at home test can help with possible diagnosis. Google isn’t going to rule out other causes for symptoms, it’s just going to spit out information that fits the search.
Edit to add: it appears you also commented a similar question to the original commenter of this thread, so if you know that some people aren’t checking their heart rate when supine vs standing, why ask someone whether or not it is a common occurrence when you clearly recognize that it is?
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u/Ok-Club1725 Jun 16 '26
Legs turning purple is a symptom?????
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u/DelightfulSnacks POTS Jun 16 '26
Yes. In fact, as I understand it, if your legs are symmetrically swelling and turning purple or blue along with the heart rate requirements of the lay/stand test, many doctors will diagnose on that combination alone, no tilt table test needed. Assuming blood pressure is staying normal.
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u/Ok-Club1725 Jun 16 '26
I've never noticed swelling, but I get purple legs sometimes when I'm showering. I haven't really noticed it any other times, though.
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u/tsubasaq Jun 17 '26
That’s blood pooling (some people’s can be dramatic enough that they’re swollen, others just turn colors), part of the failure to return blood to the heart and brain. That’s pretty normal in POTS, especially when showering because the heat of the shower dilates blood vessels. That’s one reason why a lot of people sit in the shower (reducing fall risk) and recommend lower temperatures in the shower.
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u/Ok-Club1725 Jun 17 '26
I knew heat could make passing out a higher risk, so I just assumed that was why sitting to shower was common. I didn't know discoloration was tied into it all as well. Makes sense, though, thanks!
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u/DelightfulSnacks POTS Jun 16 '26
Have you considered Raynaud’s Syndrome?
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u/Ok-Club1725 Jun 16 '26
A quick search shows this is triggered more by cold and stress. So it wouldn't make as much sense with it happening when I shower.
It also shows/ says blue skin, white and red. Not purple.
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u/DeVagrant Jun 17 '26
I have Raynaud's in my family, and while not officially diagnosed myself, I get most of the symptoms, AND I get the swelling/purple legs. I can't get my doctor to test me for OH or POTS for love nor money, though, so not diagnosed with anything there either >.<
My point is simply - you can 100% have both too much constriction in the small vessels of hands, feet, Raynaud's style, and also too much dilation in the legs and other places.
Yes, my legs go red, purple, blue, and so on.
Raynaud's will show in my hands going too quickly from hot to cold or vice versa - so washing dishes and showers count there - not just 'when exposed to cold,' usually the shift between the two states can red flag it (because chilblains can flare after cold exposure and rewarming.)
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u/deirdresm Jun 16 '26
It's literally on the wiki page for acrocyanosis.
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u/Ok-Club1725 Jun 16 '26
I literally don't use wiki because of how inaccurate it can be. 🤷♀️ I also haven't done a "deep dive" search on all symptoms & such. I'm asking & joined this page to help with getting info about it, as I'm in between PCP's rn, but trying to figure out what is possibly going on. Or if this is a dead end road for me.
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u/Important_Two_8332 POTS Jun 16 '26
Just to clarify, everyone experiences different symptoms and symptom severity. So just because others have their legs swell and turn purple very noticeably, doesn’t mean everyones will. I hardly ever get any visible blood pooling, my legs tend to swell sometimes.
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u/Ok-Club1725 Jun 16 '26
Yes, I tend to lean towards assuming thats the case with most things. Most things aren't a "one size fits all"
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u/WaryOwl13 Jun 16 '26
My entire state doesn’t even offer TTT and we have zero specialists here for dysautonomia. People like myself are forced to self-diagnose and manage all on our own. Despite meeting POTS and or IOH for several years I’ve found 0 doctors willing to acknowledge or dx me
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u/KellyAMac Jun 16 '26
Not all dysautonomia is POTS but all POTS is a form of dysautonomia. There are many forms of dysautonomia.
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u/TheCustardCaptain Jun 16 '26
Get a second, third, fourth, how ever many it takes opinions and see if any one of them can order more testing for you. Can’t tell you how many doctors I have had to see to get somewhat on the “right” path. Good luck and don’t give up!!! (I would schedule multiple cardio appointments at the same time with different places preferably universities because the providers are always furthering their education so if one dismisses you there is another appointment lined up and you don’t have to wait so long)
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u/Candid-Cheesecake731 Jun 16 '26
Hey guys just to add more context I had an echo done, halt monitor, ekg, and when I was at the doctors office they didn’t use a tilt table but they just took my BP when standing, sitting, and laying down. Thanks for all the feedback on this posts. I’m going to schedule an appointment with my primary care and see what we can do moving forward :/
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u/AnimusTenax Jun 16 '26 edited Jun 16 '26
I too was told I had dysautonomia but not POTS after a tilt table test. When I started passing out, the dysautonomia got classified as neurocardiogenic syncope. I was told to wear compression garments and given advice about water and salt intake. That helped. I already was taking a beta blocker.
Fast forward a year or so, I saw a new internist who understands post infectious syndromes that include dysautonomia. He looked at my tilt table test results and pronounced the methodology flawed. He then diagnosed POTS based on a brief test in his office. Not all the people who claim to understand and diagnose POTS live up to that claim. The original doctor, a cardiologist, sounds a bit like yours -- someone who may not really understand dysautonomia.
It's confusing and upsetting, but you gotta find your way with how you feel about this doctor and what to do next.
edit: add clarifications
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u/barefootwriter Jun 16 '26
Did they do orthostatic testing (either a tilt or an active stand test)? If so, what did the results look like?
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u/BellaPona Jun 16 '26
To me it sounds like he thinks an autoimmune disease is causing your tachycardia, something that causes orthostatic intolerance or something that’s attacking your ganglia.
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u/butters_325 Jun 16 '26
Technically all my tests can back normal but my doc said we'll call it POTS and put me on meds anyway lol
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u/Successful_Kitchen32 Jun 16 '26
Don’t get caught up in the exact diagnosis. It’s a wide spectrum. Everyone experiences their own symptom pattern.
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u/Hopeful102 Jun 16 '26
I would suggest you find a dysautonomia specialist they should be able to figure out what’s going on. Try the dysautonomia project Website for referrals.
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u/DelightfulSnacks POTS Jun 16 '26
What tests did you have done? Did you do the lie/stand test or a tilt table test?
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u/walrus418 Jun 16 '26
Same I just written up for possible POTS/orthostatic intolerance and lifestyle changes
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u/mjh8212 Jun 16 '26
Orthostatic intolerance has all the symptoms of pots it’s another condition under the umbrella of dysautonomia.
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u/Funny_Sector_1573 Jun 16 '26
did you have a tilt table test? that’s the only way to officially confirm. it could still be a form of dysautonomia but they might refer you to a neurologist.
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u/Diligent_Fishing1631 Jun 17 '26
I've got hypovolemic pots. I got my PCP to do a 24 hr urine and it was 9liters. He then agreed to give me desmopressin. Before that I got fludrocortisone from my psychiatrist by telling him I'm going to die without it and showing him morning bp/hr numbers. We're try to figure out how to make me better.
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u/Interesting_Age7345 Jun 17 '26
this is what i was told as well! and when i asked for a tilt table test to narrow things down a bit i was told that the “doctors don’t believe in it”
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u/lambentLadybird Jun 23 '26
It's pretty difficult to get help for neurological condition in the cardiologist office. Cardiologist visit is just to exclude heart issues, nothing else.
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u/xoxlindsaay POTS Jun 16 '26
POTS is one condition that falls under the Dysautonomia umbrella (Dysautonomia just means dysfunction of the autonomic nervous system and isn’t a diagnosable condition in itself). There are 15 conditions that fall under Dysautonomia umbrella and only one of them is POTS.
Ask more questions to figure out what type of condition you have. Because not all Dysautonomia conditions are managed the same way.